Picasso at the Lapin Agile, Joan at her desk

In March we went to New Orleans—I was there for the Society of Cinema Studies Conference, and Skip wanted to see New Orleans again, post Katrina, and to see friends. Large, rambling hotel largely organized around the bar. Easy to find people from the conference, but also easy to eat and drink far too much. The first night there, we put off trying to find conference friends and instead went to Magazine Street, and had dinner at the Bon Ton Restaurant. With our bill, we received a recipe card—the restaurant’s signature vinaigrette recipe on one side, bread pudding with whiskey sauce on the other.

The card ended up on the sink in my bathroom—and I see it every morning. Bread pudding with whiskey sauce. Before Skip was diagnosed, it was friendly and amusing. Now I keep it there, hoping there will be a time when he can eat such things again—when we can go to New Orleans together, eat oyster sandwiches and walk down the street sipping drinks. Strange the things that take on importance. A trip to New Orleans, a place we rarely visited. Bread pudding with whiskey sauce—something I’ve eaten maybe 5 times in my entire life.

Laurie Stone sent me the ms for her new book today—My Life as an Animal. Started reading as I downloaded it to my desktop and was captured immediately. Her prose always hits me like that—just reaches out and grabs me right away. Smart, provocative, honest. Talked to her Sunday—long, funny conversation, and a good one to have. Afterwards I mentioned to Skip that Laurie asks me questions like nobody else in my life does. He just smiled.

“She offered to come when I start teaching again,” I told him. “To help.”

“That would be a good thing, don’t you think?”

“Yes,” I said—getting that catch in my voice as I wondered what shape he’ll be in come January. Right now he fatigues quickly and is prone to stomach upset--but basically he is doing well. My friend Tamar tells me she admires the way I take things one day at a time. She doesn’t know how my mind races ahead into the future during these long white nights.

It’s late—early in the morning, really—Picasso’s birthday. I’m looking at a very bad painting I did when I was 20 years old and living in Sweden. A Picasso-esque woman with her eyes closed. It’s propped on my desk, underneath the very good graphite sketch that Skip did shortly after we started living together—a large picture of Virginia Woolf that still hangs on my study wall. I hear Skip getting up to go to the bathroom again. Time for bed.

Radiation end

The first weekday morning in almost three weeks that's totally our own. Skip had his final radiation treatment on Friday. So today we were able to get up, make some espresso, watch Democracy Now, and then immerse ourselves in our respective tasks. Gorgeous fall day here,

so I plan to walk and weed my herb garden. After writing a student letter of recommendation of course.

I'm reading Susie Bright's Big Sex, Little Death and missing San Francisco.

2nd chemo

Skip had his second treatment yesterday and everything went pretty well-- no freaky hiccups last night; no nausea. Still I was up at 5, the hour-- or so my acupuncturist tells me-- that corresponds to mourning and grief in the Chinese Medical Scheme of Things. The hour that is ruled by the lungs.

We have 2 more radiation treatments to go in the series of 14 that specifically target the carcinoma in Skip's spine. Yesterday, he woke up pain-free for the first time in months. Even sitting in the chemo infusion center for 2 hours didn't seem to cause undue distress-- so something is helping with the bad back attack that was our first notice that something was wrong. The cancer "presenting" itself, as the doc says--as though it were a Diva waiting for the properly dramatic moment in which to make an entrance.

Two to 4 more chemo treatments using both drugs-- alimta and carboplatin. Then he'll go on a "maintenance" regime, using one drug only. Chronic cancer. Chronic chemo.

It's 7:15 a.m. and still dark; and I hear the wind whistling in the trees outside. Grey, drizzly day all yesterday. The wind I'm hearing makes me think that today we're in for something a little more dramatic.

Thursday- 2nd week radiation

There's an unpleasant tone that creeps into many of Anne Sexton's poems-- Plath can certainly be darkly, sharply ironic, but there's an underlying decency there. So I always trust her. Not so with Sexton. Which is why, I think, that Transformations is about the only collection of hers that I do like. The nasty tone perfectly fits the Grimm tales, full of treachery and institutional malevolence (it's a moral universe with rules, but the rules aren't constant. You meet a dwarf in a wood. He begs a favor. In some tales, the good simpleton who helps him is rewarded. In others, it's the evil twin who selfishly hoards all his bread and beats the hapless gnome with a stick who gets the magic wishes and marries the princess). At any rate, it has been wonderful to reread these poems-- with their surprising images and turns of phrase. "And then I knew that the voice/of the spirits had been let in--/as intense as an epileptic aura--/and that no longer would I sing/alone."

We're almost done with the second week of radiation and Skip continues to fare fairly well. We saw the doc yesterday and I got the feeling she was displeased with us. She told Skip to avoid working in the yard. He told her he couldn't do that unless it was actually harming him in some way. "I want to be able to do what I can as long as possible." She set her mouth in a hard line. When he asked me about the visit today I told him, "I got the feeling she disapproves of us--." "Yeah, I got that feeling, too. Just because I was a little feisty."

Today I had to use the bathroom at the radiation clinic. Over the toilet a poisonous sign--

"If you are getting chemotherapy, flush twice."

Second week continued

At my therapist's today, I started out talking about Skip and cancer, and ended up

talking about the many, many friends I lost to AIDS. Great choking sobs as I tried to give some cohesion to an essentially disjointed story--scraps of memories: too many funerals, too many pets we had to find new homes for. My mother giving me money to go buy another "good" black dress from the thrift store, so that I could take the funereal one I had been wearing to the cleaners. The silence that would descend at dinner parties when certain names came up in the conversation. "Anybody seen Steve L. lately?" And then that chilling quiet. Eric, my shrink, is a poet--so he stayed with me. "I don't know where this is leading," I told him at one point. "It doesn't have to lead anywhere, just let it out," he said. "Let it out." Afterwards I was exhausted. Stopped in the bakery/cafe downstairs to get coffee, but they were having some kind of half-price burger day and the place was packed. I ended up fleeing. Bought a small French press coffee pot in the kitchen store instead. Took the bus and made coffee at home. Raked leaves. Called one of my former students to talk about Zizek.

Now it's time for bed. I've been reading Skip to sleep at night. Right now, we're reading Anne Sexton's fairytale poems Transformations.

Second week of radiation

Skip began his second week of radiation today. While he's still doing very well, some small symptoms are beginning to emerge-- fatigue, skin sensitivity. Reading an article by Christopher Hitchens about his (Hitch's) esophogeal cancer, I realize that I'm afraid that critical parts of Skip's "self"-- those things I'm used to thinking of as integral, core components-- will unravel all at once. In much the same way that Christopher Hitchens lost his voice. In a Vanity Fair article, Hitchens describes trying to hail a taxi in New York; opening his mouth to bellow in his usual way, he found he could only make a tiny meowing sort of noise. Taxi whizzed right past. (http://www.vanityfair.com/culture/features/2011/06/christopher-hitchens-unspoken-truths-201106).

Trying to catch up on work and starting to read Miéville's The City and The City.

First week of radiation

We made it through the first 4 treatments, with few noticeable effects. After last weekend and the extreme fatigue that Skip experienced after chemo, I was very nervous about how he’d react. But his energy is good and, thanks to herbs and acupuncture, he’s eating well.

The treatment itself only takes about 10 minutes each session. Skip lays on his stomach on a table, the kind you lay on when you’ve broken your leg and need to have an X-ray. A little radiation device is mounted from the ceiling, and once Skip is in place, it comes down and gives him a zap. Actually about 3 different zaps, all from different angles. There’s no pain involved and it’s easy to forget that we’re dealing with measured toxicity.

While he is “inside” having treatment, I sit in the large carpeted waiting room and read. There’s a large picture window at one end of an otherwise upscale, institutional waiting area. (The faux living room style reminds me of what I imagine Harley St. offices to be like). The window looks out on a small sculpture garden, and the three chairs that are thoughtfully arranged there give people like me a quiet, pleasanter place to sit . As Skip acerbically remarked one morning, the greenery and sculptures are all behind glass, “just like another aquarium,” he quipped. But it’s so much better than facing the full-scale large room that I’m grateful for it, glass or no glass.

What I’m reading these days is Balzac—re-reading Père Goriot whose 19^th c. Parisian emphasis on class, money and the way these things are inscribed on and in the body seems a perfect corollary to cancer care. Skip’s reading China Miéville’s The City and The City, a sci-fi noir about 2 cities which co-exist in exactly the same physical space. Each city has its own language and customs, and inhabitants of either one have to learn to actively “un-see” the other. It’s been read as an allegory for class relations in contemporary London—but also seems to me to be a good analogue for Skip’s own body. So easy not to see the cancered Skip that occupies the same physical zone as “healthy” Skip; I have to force myself to look for symptoms and signs—to read his body “other-wise.” So, we’re having interesting conversations at dinner time.

Our dear friend, Chris, came over this past week to help us modify the bathroom (taller toilet and support bar) in case Skip has any more intense intestinal episodes; and he helped me to move things around in the den so that it’s more comfortable to sit and watch television/ movies when Skip is sleeping in the living room. The weather has been beautiful here, and the day Chris came over to work, he took a lunch break to sit on the deck with us. Fresh tamales and spinach salad, glorious fall color, pleasant conversation.A “normal” day for us—with the added bonus (for me, anyway) of fewer work pressures.

Emphasis on fewer. Since I’m on family leave, I don’t have any coursework or teaching pressures —but there are still letters of recommendation to write for graduate students (so dispiriting in this job market) and I have administrative duties I’m trying to discharge via laptop from home. Hard to make myself care about the various vagaries that plague the program or department or journal. Every time I get an e-mail, I want to write back—“are you kidding? At least we’re all alive.”

The Flâneur

Oct 2, The Flâneur

Skip slept most of yesterday. Hard to describe the peculiar kind of loneliness that sets in during these times when he sleeps all day. I’ve lived alone and we certainly don’t spend all our time at home together, but his post chemo sleeping doesn’t leave me feeling exactly free to do what I want. And it makes me terribly aware of the fact that Skip’s just not here in quite the same way. Not at all the good feeling I have when I’m watching a movie and he’s at work in his studio, for example—or when he’s taking a short nap in the den. Preferable to seeing him in pain, certainly. But lonely.

So, I began reading Edmund White’s Flâneur. It’s a slender book based on the conceit that you can walk from one end of Paris to the other in a brief period of time. As he takes us through each arrondissement, and quartier, he gives background: historical and literary mainly. Not the tour book kind—oh, it’s informative but also gossipy as can be. Fun read and beautifully written.

And it brings memories. Reading the description of the Marais, the Jewish quarter in Paris, brought back vivid memories of the hot summer when we sublet an apt on the Rue Vieille du Temple— a place so tiny the owner had stuck little bits of foam on the edges of all the furniture. Insurance, we supposed, against her large and clumsy American “guests” impaling themselves on a bookcase in her absence.

The apartment was near Goldenberg’s deli and the twisty little courtyards where Rabbis presided over everything—even the parfumeries and the dress shops had a resident Rabbi. There were falafel stands and, sometimes, too many memories. Once I saw a woman crying near the place where, she told me, she had last seen her mother. Another time, we found a bench outside what appeared to be the only Catholic Church around. Pretty little garden spot, lush with flowers, set in from the walkways of the courtyard (there is—or at least was at that time—always du monde on the streets in the Marais. Lots of people walking). As we bit into our falafel/pita sandwiches, we noticed what we hadn’t seen before, a small plaque stating matter of factly that a major deportation of Jewish children had taken place from that very spot. One of the few places in Paris where WWII collaboration was acknowledged and marked. I snapped a photo of the plaque and then, without a word, we packed up our lunch and moved on—

That summer, a large ACT UP action was being organized in the Marais. Everywhere we looked, it seems, posters exhorted us to hit the streets to demand that something be done about the AIDS scandal that had recently broken in the French press. Health officials had knowingly shipped AIDS (SIDA, in French) tainted blood to hospitals, with predictable results. For the gay population, not only the crime itself but the public reaction was an issue. Those infected through contaminated transfusion were depicted as “innocent” victims of the disease, and the gay community was understandably pissed off. “As though the rest of us are guilty,” one flyer read. And “we are all innocent victims”—a play on the 1968 slogan students had chanted when Daniel Cohn-Bendit was slated to be deported back to Germany. “Nous sommes tous les juifs allemands” (“we are all German Jews;” read “we are all scapegoats; we are all outsiders”)

A large manifestation was planned. In a misguided attempt to show it understood, the health ministry had mounted some kind of AIDS public awareness campaign. Huge posters showing closeups of people’s faces—beautiful, pristine, unmarked faces-- were everywhere. The tagline was always the same. “I am sero-positif. Would you… [sit next to me on the bus, eat in the canteen with me, etc?]” One placard showed a young man with an earring. Someone had altered the tag so that it read “I am sero-positif. Would you fuck me?” And many of the posters had been changed to show lesions on the beautiful models’ faces.

Long talk with my gay cousin, Mark, yesterday. Mark was with us in Paris the summer of 1985—not the summer I’ve been describing, but an earlier one. I remember one night we took a long, crazy, Edmund White-like walk all the way across Paris and I plan to send him this book when I’ve finished reading it. Now, Mark works in palliative care and he phones me regularly to discuss Skip’s pain medication—all business and chemical formulas, so different from the way he usually sounds. But toward the end, we always fall back into casual conversation.Mark adored my mother and recently we had a long talk about her. When he first moved to San Francisco, he told me, she kept him pretty close. “I didn’t really start going to clubs until I moved to New York,” he said. “Theresa’s the reason I’m alive today.”

first week of treatment

"October takes everything as usual," Eileen Myles writes in her wonderful novel Inferno. Usually I'd place the stress on "usual" in that sentence; this year I want to stress everything. It's been an exhausting and, in some ways, a dispiriting week; rhythmically oddly reminiscent of the German film Das Boot. Long periods of down time where not much is happening, followed by suddenly intense red alerts. Das Boot takes place during World War II, so the red alerts take the form of water pouring into the submarine. In our life, the red alerts all turn on drugs-- needing them and not having them (at least not having the right ones), or having them and Skip reacting badly. It's been a little of both this week-- not having and having-with-reaction.

After days of being left to our own medical devices (one appointment, no treatments) last week, this week has been intense. Monday there was a consultation with the radiation oncologist to see about reducing the carcinoma mass in Skip's spine. Tuesday, Skip went to the hospital to have a port (for chemo treatments) installed. Wednesday was the first chemo treatment. Thursday he had a CT scan to do the radiation treatment "map" and his body was marked (presumably so they can always find the right spot). Friday we dealt with some of the more painful side effects of chemo and the drugs he's taking for pain: constipation and abdominal cramps so severe, all I could think to do (besides running to the drugstore to find yet another med) was to coach him in Lamaze breathing. At one point, I really did think he'd pass out. At another, he asked me to hold his head. Such a thin voice I didn't recognize it as his. By that time I was supporting his whole upper body, so he wouldn't fall. Tamar phoned, wanting to bring soup. "Can't talk," I said. Then she phoned back to see if we needed to go to the hospital. "No."

Finally, the meds worked. He went to the bathroom and then slept the rest of the day. I cleaned up the Milk of Magnesia we had managed to spill all over the floor. Wrote a course description for the class I'm teaching next term-- "Intro to Cultural Studies"-- subtopic, the body, I'm sure-- and pain. Called Tamar back. Made dinner. Read, read, read all night.

Artforum book review (Bookforum) mainly. Joan Didion has written another book about death, Her adopted daughter died shortly after her husband (The Year of Magical Thinking) did, and Blue Nights is about that-- Didion's relationship with Quintana and her response to her daughter's death. Struck by the way the reviewer stressed that Quintana was Didion's adopted daughter. My "son" is really my stepson, the child of Skip's first wife. But if he died, I know how I'd feel it in my own body-- huge dull ache of pain that takes breath and appetite away. The "step" doesn't matter in my feelings about him, just as I don't believe the "adopted" matters in the way adoptive parents feel about their children. But Gary Indiana's review was terrific, "adopted" notwithstanding, and it made me want to read the book. Blue Nights for my own white nights of no sleep.